Family-centred Pulmonary Rehabilitation to Empower Carers

Family-centred Pulmonary Rehabilitation to Empower Carers

Chronic respiratory diseases are leading causes of death and disability worldwide, imposing an enormous burden on individuals, families, and societies. Dependence on others begins early in the disease course. Over 70% of people with a chronic respiratory disease rely on informal care for daily assistance. Informal carers face multiple demands that may affect their health and ability to provide care. However, support interventions remain largely absent. Informal carers have identified pulmonary rehabilitation as an opportunity to also support them. Pulmonary rehabilitation is a cornerstone non-pharmacological intervention comprising exercise training, education, psychosocial support, and behaviour change, and is known to improve symptoms, functional capacity, quality of life, and survival. Although including informal carers in pulmonary rehabilitation has shown promising benefits for family adjustment, pulmonary rehabilitation remains patient-centred, with no dedicated support for carers' specific needs.

This study will therefore redesign pulmonary rehabilitation to act as a dual-support intervention for both people with chronic respiratory disease and their informal carers. The study aims to assess the effects of carer inclusive pulmonary rehabilitation on preparedness for caregiving.

A total of 120 patient-informal carer dyads will be randomly assigned to either carer inclusive pulmonary rehabilitation or standard pulmonary rehabilitation. In both groups, patients will undergo pulmonary rehabilitation. In the carer inclusive pulmonary rehabilitation group, informal carers will also participate in the education and psychosocial support sessions, which will be specifically designed to also address their needs. In the standard pulmonary rehabilitation group, informal carers will not participate in the pulmonary rehabilitation programme.

Chronic respiratory disease is an umbrella term for conditions affecting the lungs and airways, including chronic obstructive pulmonary disease, interstitial lung diseases, asthma, and lung cancer, which are leading causes of mortality and impose a substantial societal burden worldwide.

The natural course of a chronic respiratory disease is progressive, with dynamic and unexpected declines, shifting among acute, stable and serious phases. Dependence on others begins early, and more than 70% of people with chronic respiratory disease rely on informal care. Informal carers, i.e., relatives, partners and friends in unpaid roles, have a wide range of responsibilities including gathering disease and treatment information; managing medication, appointments, symptoms and exacerbations; supporting treatment adherence and healthy lifestyles; handling household tasks; overseeing equipment, finances and decisions. The support provided by informal carers has been shown to improve health outcomes, improve treatment adherence, and promote healthier lifestyles in people with chronic respiratory diseases, easing pressure on healthcare systems.

Despite many positive caregiving experiences, informal carers face significant challenges due to their extensive responsibilities, and support interventions remain scarce. Informal carers have identified pulmonary rehabilitation as an opportunity to also support them. Pulmonary rehabilitation is a cornerstone non-pharmacological intervention comprising exercise training, education, psychosocial support, and behaviour change, and is known to improve symptoms, functional capacity, quality of life, and survival. Involving informal carers in the education and psychosocial support sessions has been shown to improve family coping and adjustment. However, these sessions primarily focus on patient-related topics, such as information about the disease, treatments, healthy lifestyles, symptom management, and emotional support. Although these topics are also relevant to informal carers, they are not tailored to their specific needs. Furthermore, it is equally important to address topics that focus on carers' own needs to safeguard their health and strengthen their ability to provide care.

This study will therefore redesign pulmonary rehabilitation to act as a dual-support mechanism for both people with a chronic respiratory disease and their carers. The primary objective of the study is to assess the effects of carer inclusive pulmonary rehabilitation on preparedness for caregiving. Secondary aims are to explore the effects of carer inclusive pulmonary rehabilitation on informal carers' burden, fatigue, symptoms of anxiety and depression, health-related quality of life, disease knowledge, health literacy and self-efficacy; and on people with chronic respiratory disease's functional capacity, muscle strength, impact of the disease, fatigue, symptoms of anxiety and depression, health-related quality of life, disease knowledge, health literacy and self-efficacy.

A total of 120 patient-informal carer dyads will be randomly assigned (1:1) to either a 12-week carer inclusive pulmonary rehabilitation programme or a 12-week standard pulmonary rehabilitation programme (60 dyads per group). In both groups, patients will undergo pulmonary rehabilitation. In the carer inclusive pulmonary rehabilitation group, informal carers will also participate in the education and psychosocial support sessions, which will be specifically designed to also address their needs. In the standard pulmonary rehabilitation group, informal carers will not participate in the pulmonary rehabilitation programme.

Participants will be recruited as patient-informal carer dyads. Informal carers will be identified by a person with a chronic respiratory disease referred for pulmonary rehabilitation.

Inclusion Criteria

Informal carers:

• Aged 18 years or older.
• Providing unpaid informational, physical, practical, emotional, social, or financial support to a person with a chronic respiratory disease.
• Identified by the patient as the primary informal carer

Patients:

• Aged 18 years or older
• Diagnosis of chronic obstructive pulmonary disease, interstitial lung disease, bronchiectasis, asthma, or lung cancer.
• Clinically stable in the previous month (no changes in medication or occurrence of exacerbations)
• Referred for pulmonary rehabilitation.
• Report having an informal carer

Exclusion Criteria

Informal carers:

• Unable to provide informed consent
• Signs of cognitive impairment

Patients:

• Unable to provide informed consent
• Signs of cognitive impairment
• Participated in a pulmonary rehabilitation programme within the last 6 months
• Neoplastic or immunological disease, or an unstable or significant cardiac, musculoskeletal, neuromuscular, or psychiatric condition that limits the ability to participate in the pulmonary rehabilitation programme.